Re-tooling the Alzheimer’s PR machine

Every day I receive a Google Alerts update for “Alzheimer’s disease” which gives me a general idea of what is being talked about in the news regarding AD. The breadth of information and commentary can be staggering, as AD touches so many disciplines. There is a lot of the latest hope for a scientific cure, often reports of a drug failure, far-fetched stories touting blueberries and coffee as the cure for what ails us, moving stories of communities responding to dementia and increasingly (and promisingly) articles describing the link between physical and mental health and dementia.

What nearly all of these news stories will have in common, to a varying degree, is the typical ‘politics of anguish’ imagery of Alzheimer’s; a rampaging unstoppable dread disease that we must wage war upon for the protection of our crippled elders. It’s a story that has been wildly successful because it is emotive, extremely simple, and has been pounded into our subconscious for decades. Even articles that espouse a contrarian message of modifiability often employ this language – though to a lesser degree – because it is so engrained in our culture. It is wildly successful PR.

However, as research in dementia continues to affirm the importance of health measures such as physical and cognitive activity, diet, engagement with others, and education, surely it is time to re-tool the PR machine, and swap out the doomsday language for something more informative? Perhaps, in order to change our understanding of dementia and our cultural approach to health, society needs to hear this sort of messaging more frequently, to have it engrained in our subconscious by the sort of compelling, repetitive PR move typified by the ‘politics of anguish’? Perhaps this is necessary to actively lobby for changes in society such as the creation of parks to exercise in, more sustainable food systems, better schooling and so forth that ultimately affect our general brain health?

The unfortunate obstacle to this is coming from researchers in molecular biology for reasons that are, from one scientific perspective, justifiable. But first, a refresher: many researchers around the world think Alzheimer’s disease is caused by big lumps of proteins called amyloid beta and tau that kill your brain cells. And second, you need to understand something that is a little bit ridiculous. Are you ready? Quite often, someone can have the clinical symptoms of Alzheimer’s disease such has memory loss but… (drum roll please)…they don’t have Alzheimer’s disease! Confused? So you should be. What is happening in these individuals is that their brains have been damaged by lots of burst blood vessels and other abnormalities of the cardiovascular system. Despite having the symptoms of AD, many researchers will tell you that these people don’t have ADbecause there are no big lumps of amyloid beta or tau proteins.

This absurdity of not-having-Alzheimer’s-even-though-you-have-Alzheimer’s is actually really important. Let’s take an example: many studies have shown that people with diabetes have a much higher risk of developing the type of Alzheimer’s with cardiovascular problems, and that lacks amyloid beta and tau. If you want people to adopt a better lifestyle to avoid diabetes and the risk of Alzheimer’s-that’s-not-Alzheimer’s, or you want to lobby for action of any kind that would facilitate that, your voice is effectively drowned out by the chorus of researchers stating that what you’re studying isn’t AD. Instantly, what you’re studying is decoupled from AD, to some extent marginalized and effectively loses the social clout that comes with AD name recognition. Even though by some measures it is Alzheimer’s. What is effectively occurring is a battle to use the Alzheimer brand.

Of course, what follows is an inability to change the conversation about AD. The effort to create a new dialogue that attempts to repetitively and effectively deliver compelling narratives about the modifiable nature of AD is stymied, weakened by the opposing PR machine spouting hopelessness. The role of science is not solely to produce useful technology, but also to dispense actionable information to the public to better their health. We can make the case that we are wholly justified in changing the nature of our PR machine to maximize our return on our studies.

It is worth repeating one more time the reality of the situation: there are a number of lifestyle habits that we can encourage people to adopt – not only through outreach education but through the provision of services and facilities – that really work. They create healthier brains, and reduce the incidence of dementia. That is worth talking about, amongst ourselves and in the media, regardless of the underlying biology.

Simon D'Alton is a postdoctoral researcher at the University of Florida in Gainesville, FL where he studies the mechanisms of neurodegenerative diseases. In addition to his scientific research, he is passionate about the role of public health in chronic disease and how we might better look after our brains throughout life.

Comments

Great piece, Si, gives voice to the frustration so many of us have felt for years.

Flipping the script is much needed, not only in terms of creating more “sticky” messaging to encourage brain health initiatives at the individual/community level, but also to militate against the notion that people who already have “AD” are simply obsolete. The politics of anguish rhetoric absolutely marginalizes the humanity of these folks, ignoring the rich lives that many still lead while reinforcing public stigma.

The question to me is: will the Alzheimer’s Association ever be willing to take the lead in developing new rhetoric? Until that happens, I don’t see the cultural scripts changing much, except within small networks of people like us who are highly sensitized to language and its real-world consequences.

The network called forMemory applauds Si and Danny. We are persons affected by cognitive changes in midlife. Fundraising that increases fear leaves us isolated and stigmatized. Such “politics of anguish” takes attention away from meeting the needs of today and tomorrow.
The large numbers of us who experience a mix of what has been called Alzheimer’s disease along with vascular disease have been largely ignored. We haven’t had “pure enough Alzheimer’s” to get into narrow studies. Some research published this February (JAMA Neurol. 2013;():1-7. doi:10.1001/jamaneurol.2013) should make it clear that we are the very ones who warrant study and intervention. We need public health strategies right now to help us on our particular journeys. We need our neighborhoods to become environmentally healthy for our sake and that our children and children’s children. We each need training and accompaniment to become more relaxed, physically fit, nutritionally sound, imaginative, and socially engaged. Many of us are low in income, having had to leave our jobs early. But we have big hearts that can still contribute. If you invest in us, you invest in future generations and in the communities that everyone needs. Learn more about us at http://www.formemory.org
With great hope, Mary Kay Baum, Chair of forMemory, Inc.

Great one Simon. Today I got the alert about CMS refusing to pay for amyloid imaging except rarely in research. No one can make a convincing case that paying for such expesnive imaging really would help people. wth memory problemsiThe only thing we know is that is would support the dominant and misleading, if not false, story you expose in yoru piece and of course support the researchers and the Alzheimer Assocaion! Peter

Hey thanks so much for your very appropriate, succinct, and timely comments (sharp critique?) above. I agree with Danny’s assessment that you have given voice to a tricky notion to express, and also his note that: “I don’t see the cultural scripts changing much, except within small networks of people like us who are highly sensitized to language and its real-world consequences.”

I network with the Alzheimer’s Association and many others here in Portland, Oregon, have a recent master’s from Marylhurst University (private university focused on human potential and ethics-based approaches to both MBA and Interdisciplinary Studies/gerontology programs) and additionally have long been involved in direct service and advocacy for many different groups *officially* labeled with various and sundry “severe” and “progressively declining” so-called “mental disabilities” (as if ANY of us DOES NOT have SOME kind of mental disability!). In my work I have found that the language we use does indeed serve a subtle but pervasive social power/influence purpose of sorts; and of course having an official label does give one access to resources that one might otherwise not qualify for…and unfortunately also too often supplies the stigma that such labels does incur.

From my rather limited Oregonian perspective, my view is that the Alz Ass’n like so many other “nonprofits” (see Susan G. Komen Foundation/breast cancer, for example) loses sight of its stated mission in the hurried and heavily regulated business of charitable giving. the cash and other material donations stream in, and the value of those dollars, much like our government’s apparent attitude toward our tax dollars, becomes diluted and is not protected and/or effciently directed toward the constitutients they supposedly represent.

I believe the only effective way to change this situation is through the media, both traditional television/newspaper and internet/social organizations. That is why I continue to “hit the streets” (i.e.- relate directly to consumers) in order to become intimately familiar with their experiences and first hand accounts of how these advocacy orgs either were helpful or not. The stories then need to be condensed and presented to the media so that in turn the public can easily absorb the message(s) and begin to concentrate its response and make effective corrective action toward real and lasting solutions.

Unfortunately I am just one independent, severely *underfunded* researcher; and aside from the Marylhurst Gerontological Association I have little clout in my community; at least so far. But Jon Bartholomew (OR Alz Assn public policy director based in Portland), who makes frequent trips to Washington to meet with his national team has by now heard several of my critiques of the lack of effectiveness and direct support to families affected by the “disease,” and has assured me he will carry those critiques to his superiors. Indeed there is some evidence most recently (and however slight) that his association IS slowly changing it’s tune and refocusing on families over miracle drug research, but time will tell if that amounts to any significant changes. Meantime, I will now begin to approach the media I mentioned in an effort to light a fire under their proverbial seat cushions. Us Boomers are too well educated relative to other cohorts, and too acquainted with the notion of activism and resulting change to allow business as usual in the face of this enormous public policy challenge.

Thanks for your thoughtful comments. It sounds like you are carrying an important message in Oregon, even if you feel the effect might be minimal initially. I’m interested to hear if you have a particular way of working with the media to present the stories of the ‘consumers’, or if there is a particular method you use to catch the attention of the media.

Hello, and thank you for your thoughtful and thought-filled observations. I believe most of the current emphasis on current PR efforts flows from a decision of our National Alzheimer’s Association to scare folks with the fact that as their president said “Everyone with Alzheimer’s Disease is going to Die.” This emphasis on death and the “suffering of the suffers” must have ranked high on the list produced by focus groups of words and thoughts which scare folks into donating to and/or supporting more and more money for cure/slow down Alzheimer’s Disease.

It is a harsh and I believe purposeful strategy to sacrifice the emphasis on researcher improving the quality of life of a few (5.4 millions) for the good for the many (195 million). Many other National Alzheimer’s from other countries have adopted similar strategies. Private researchers and their organizations have seemingly but to a lesser extent picked up on this “Do you want to die of Alzheimer’s?” less than subliminal messaging strategy.

I believe what is required is more than a retooling of strategies – it is a moral realignment of values, purpose, vision, and mission. Saying you represent the best interests of some group and then adding to the stigmas of that group through TV advertisement campaign, statements of Senior Leadership, and endless press releases is in my opinion immoral. Occasionally saying the opposite is to my mind playing both side of a moral issue as the same time. The motives seem clear to me – power, influence, pride and most of all more MONEY.

Admitedly I have a bias, but I believe it is based on sounder moral and ethical standards that are practiced by many creators and writers of what passes for “news” about Alzheimer’s.

Of course, in the end everyone must decide for themselves. Truly, given – Not to decide is and scope, breath, and sheer amount of the current PR on Alzheimer’s research is to decide!